Silbaugh Family Story

The Calliope Silbaugh Family

….a chance of survival between 30-40%

Calliope was born on Easter Sunday in 2012. She was a very pleasant baby and in seemingly good health. All of her baby check-ups were good – her four month check up was in early August of 2012, and the pediatrician was happy with her growth.

Our family had become regulars at the YMCA during that summer and enjoyed swimming. Calli had been in the water since she was about 6 weeks old. In late August 2012, when she was just shy of 5 months, she became very fussy after leaving the pool, which was extremely unusual for her. We thought it was swimmer’s ear or that she was feeling ill from consuming pool water. She became very ill that evening. The following day she was no better, and we took her to her pediatrician.

The pediatrician quickly decided she needed emergency attention. From the pediatrician’s office we went past 2 other hospitals and straight to Hershey Medical Center in an ambulance. A CAT scan revealed a large mass in Calli’s brain. Surgery was immediate and lasted a long time. That first surgery was limited to removing enough of the tumor to keep Calli stable. The operating room liaison fell in love with Calli and took amazing care of us. Whatever transpired during the surgery made quite an impression on the entire surgical team – the anesthesiologists came to visit and check on Calli following that first surgery. The brain surgeon knew that it would take at least 1 more surgery to remove more of the tumor, but Calli needed to recover and get stronger first. He didn’t have high hopes of being able to remove the whole tumor. Biopsies were sent out so they could determine what kind of tumor it was.

While in the ICU, we met our oncologist, which was quite a shock! In our shocked state, we had not made the connection between the brain tumor and cancer. We also met our Four Diamonds social worker. We did not know why we needed a social worker. She told us about the Four Diamonds Fund and said that we would never have to worry about paying for Calli’s treatment. At that point we had not even started to think about long-term treatment or the overall impact on our lives beyond the moments in front of us. We were still waiting for the biopsies and a diagnosis. I remember talking to the neurosurgeon in the hallway outside the Ronald McDonald room at the old hospital. I couldn’t understand why a diagnosis was taking so long. They had the cancer narrowed down to 5 types, 4 that were resistant to chemotherapy and one that was responsive, but was a rare and far more aggressive type. We thought we knew which one to pray for, but the doctor was not as positive as I was. The chemo responsive type was an extremely rare form of brain cancer with a chance of survival between 30-40%. We were stunned.

We had been in the hospital 24/7 since our admission via the ambulance and ER, sleeping in the family room. Our extended families had been taking turns living at our house taking care of our older daughter Sydney, who was 3 years old at that time. Syd came to the hospital most days and was not at all upset about Calli’s tubes, wires, and machines. It was where our family hung out now – she just went with it.

The second surgery came about 10 days after the first. We were better prepared this time, surrounded by family members for support. Miraculously, the rest of the tumor was removed during the second surgery. This was not the expectation, and we were extremely grateful!

We were very excited, ready to get on with life and out of the hospital. Just before our discharge we were told that the diagnosis was Glioblastoma multiforme. It was the same rare cancer we had talked about that night in the hallway. Calli was one of only 50 documented cases in children. We were told not to research the diagnosis online as the results would be for adults and the prognosis for adults is very poor. That afternoon we were transferred to 7 WEST, the oncology wing of the children’s floor in the older part of the hospital.

Nothing can make a parent feel as terrible as a cancer diagnosis. We had grown familiar with the PICU nurses and routines, now we were in a new and very different environment. The sounds were different, the routines were different, and the faces were kind, but still unfamiliar. Our nurse knew that we were living a nightmare, and she spent lots of time in Calli’s room that night. She became one of Calli’s favorite nurses and one who we always looked forward to seeing. It was the first time we had been able to spend the night in the same room with Calli. That alone was overwhelming. Our Four Diamonds social worker was there the next morning. She guided us through many of our future stays at Hershey, which ended up being six different admissions of about 21 days each. We spent more days in the hospital each month than we did at our own house. Calli’s treatment plan and young age dictated that she would stay at the hospital in a controlled environment until her white blood cell count was “safe”. Her final round of treatment included a high dose of chemotherapy and a stem cell rescue. Calliope had the first stem cell transplant performed in the new children’s hospital! Her total admission time was around 180 days including Thanksgiving that year.

Our Four Diamonds Social Worker helped us with all the home care arrangements that we needed, completed family and medical leave paperwork, gave us meal cards for our hospital stay and gas cards to help with travel to and from the hospital. She was always available to answer questions or direct us to the right place for answers. Aside from covering Calli’s treatment, having our social worker available was probably the greatest asset the Four Diamonds provided.

Another huge benefit was the great music therapy sessions. A few times a week the music therapist would come by and play with Calli and even from an early age (before she could even sit up) had her participating. It always brightened Calli’s day to have the music therapist stop by and she often left instruments for Calli to play on the days the therapist wasn’t able to come.

Calli was under “house arrest” during THON 2013 because she was recovering from her high dose of chemo. She was not permitted to be in any large groups at all. We watched the live-streamed coverage online all weekend. It was hard to “leave” the dancers to do anything else around the house. We danced along and left the TV on when we finally had to go to bed. We just couldn’t turn away from all those wonderful students.

During THON 2014, Calli was recovering from another surgery to place a drain in her skull to remove fluid that was gathering in the space left by the tumor. The rest of us took turns driving to State College and participating in the THON events with Sydney. Again the live coverage ran constantly in the house and we felt even more connected than ever. THON 2015 was Calli’s first THON when we were connected with Springfield!

We have loved being paired with Springfield as our THON org. They have shown us amazing amounts of love during the times away from THON. We were amazed at how much attention the members gave Syd & Calli. They are interested in the daily things that go on at home and love to be with our girls. Some have even traveled from Philly to Harrisburg to see Sydney at a dance recital. Even though she is not the Four Diamonds child, Sydney is treated as if she is a princess, just like Calli. Every PSU student we have ever been in contact with at any of the THON or Springfield events has been so amazingly loving and kind. They simply love kids! They fight for kids with cancer, but they love all kids! THON volunteers are amazing!

Calliope is now six and has been through several THON years. Both girls love THON and get uber excited when it is coming. Springfield sends us a 100 days till THON calendar with photos of the members which is a favorite of the girls. Calli loves to read, and read, and read some more. She started piano last year and is currently in first grade. She loves playing board games, camping and swimming. She also loves to be the center of attention and assumes that EVERYONE knows her.

We are so appreciative to The Four Diamonds Fund and thankful that our pediatrician sent us directly to Hershey Medical Center that August of 2012. As of November 2018 Calliope is currently 5-½ years cancer free!!!